Good Intentions

October 26 today? Last post so enthusiastic about the lymphedema therapy journey to which I was hellbent on committing?  Dermatologist appointment postponed AGAIN?  Several friends questioning my actual existence due to (my) lack of communication?  Shit, it has been a busy few weeks. 

I find myself frustrated again today. Surprise!!  Not necessarily cancer-related, but I'm sure I will inevitably spin it that way.  Every day I examine my actions, more than I did before (cancer).  (See - did it already!)  I want to accomplish things, I want to nail that to-do list, I want to be everything my kids need me to be, I want to NOT be a downer to my friends, I want to survive my kitchen renovation without the hair loss I was fortunate to avoid during my immunotherapy... but I somehow always feel like I fall short. 

I'm doing the best I can but that "take one day at a time" stuff is actually very difficult to do.  When you break it down into small pieces and truly look at it and realise you're just too tired to do it all, it's a real pain.  I try, but.. what's that they say about the road to hell being paved with good intentions?

I ran into a friend today that I haven't seen in a while, and we chatted quickly to catch up "in code" in a busy store with our kids in tow.  I was open about the fact that yes I did want to get together for coffee and a visit, and I was also open about the fact that I probably wouldn't be able to commit to the actual coffee date in the next couple of weeks.  She seemed to understand and is equally busy, we hugged and wished each other well and we will try again in a few weeks.  *sigh*  I feel bad!  

More importantly what I got from the conversation is my friend's comparable feelings of guilt for not being able to do the things she "normally" does.  She happens to be temporarily off work for health reasons as well, and one of her first identifications of things we have in common right now is the guilt for being "off."  She said the same things I feel every day; in our quick conversation we bonded over that mutual feeling but we also agreed that we need to look after ourselves and our kids numero uno.   Why can't we just shake the rest of the feeling and just go with the looking after ourselves and kids thing?  Aarrghh

Part of looking after ourselves IS the visiting with friends and the social support we receive in doing so.  And I truly mean it when I say I want to visit!  But I notice that I am less and less able to commit to the coffee date.  With the people who are my FRIENDS!  

I am so absorbed with what my family and I are doing, and I am inconsistently and sometimes unexpectedly exhausted so I just run out of time.  Days run into weeks and my feelings of guilt compound until they feel like a noose around my scarred neck and I retreat, I hibernate, I listen to my therapist saying "stop being so hard on yourself!"  I love my friends from a distance.  And I keep plowing through the to-do list as I see fit.  

Therapist says that's okay, I (we all) should be doing exactly what I (we all) want. At any given moment.  Oohh that's a huge statement, what a can of worms!  I believe that if we all just ran amuck doing what WE want then everything would be a disaster!  But that could be my Catholic upbringing speaking... how do the Sociopaths do it, like really?? 

The core of what is bothering me I think is actually the number of times I have had this happen lately.  I haven't invited my veggie friends for a visit since.... ummm.. as I told them last week when I ran into them downtown - I still have their Christmas gift from last year!  I am the WORST.  We talked about having tea, they emailed me, I still haven't caught up on email.... and I have not had the visit.  And last week also I completely stood up another friend I haven't physically seen since I was first diagnosed - how the hell could I FORGET that we were going to meet?  I can blame chemo brain, but I really hate that.  I postponed my much anticipated lymphedema treatments again. My CCAC nursing visits too, I have cancelled the last three due to scheduling conflicts.

The road to hell is paved with good intentions is a proverb or aphorism. An alternative form is "hell is full of good meanings, but heaven is full of good works."
One meaning of the phrase is that individuals may have the intention to undertake good actions but nevertheless fail to take action. This inaction may be due to procrastination, laziness or other subversive vice. (I don't think this is me...)

Nonetheless, the saying is an admonishment that a good intention is meaningless unless followed through.

But how?  I WANT to have the friend visits.  I WANT to deal with the lymphedema.  I DON'T want to see the dermatologist...but anyway...  I think maybe I'm just tired of all of it.  I want my life back.  I cannot fathom that this is my "new normal."  I want to go to work, be healthy, run around doing everything all the time, not have to discuss why I am not at work and why I am so antisocial.  The stigma alone is worse than the diagnosis!  

I have no idea what to say when people ask me about my health.  My years of intermittent therapy-couch time have taught me to truly answer WHY I'm frustrated.  Well, this is likely it: I don't know what to say.  Metastatic Melanoma is a shitty goddamned enigma of a fatal disease and I am back to feeling like I have a digital clock blinking above my head counting down my time to live.  

I'm pretty sure that's simply Fear speaking, I don't have any medical-speak news as to why I feel this way. My last CT scans were same, no progression of disease. Unremarkable. Fantastic.  But I am still plagued with confusion about what to say when asked by friends how I am doing.  

I don't know.  I know I'm still here today, and I know I am helping my kids throw their kick-ass annual Halloween party again this weekend, and I know I have three trips to Sunnybrook in the first three weeks of November.  I know I'm still having major insomnia and I know I'd like to strangle the surgeon who made my baby cry a couple of weeks ago when re-opening her ankle surgery scars to remove TEN-FOOT LONG screws with a WOODEN screw driver!!

I can't get any more honest than that.  I hate everything. (to quote George Strait.) (Yes. George Strait.)

Thank you for listening, if you're still here reading my complaints, then awesome, yes, writing is therapeutic for me.  I wish I could learn to write FICTION!!   

Did I mention we are half-way through a kitchen reno right now?  I took a photo of my pooch the other day which just perfectly summed up my feelings.  He was looking all dejected curled up on the most uncomfortable part of the half-remodeled living room floor in the middle of all the renovation rubble and I couldn't help but giggle at that woeful little face:

PS - It's also full moon time.. that accounts for a certain amount of crazy in this household.  ;-)

 

Building a Team (New: Lymphedema Therapy)

Yesterday I met a very insightful lady. She was informative, caring, we have an interesting number of quirky things in common, and she gave me a headache.  Yes, a headache.  She worked me hard, though she did all the work: my first assessment and massage for treatment of my pain-in-the-leg lymphedema.

I have been procrastinating on this method of treatment for over a year, don't ask me why... I think it has something to do with general denial of my situation and having enough appointments to deal with already and being a busy Mom blah blah blah.  

I know that getting help with lymphedema is a whole-life approach, but I also know that if I want to fully rehabilitate my body after the beating it has gone through in the last year and a half, then I have to stop weaseling out of the lymphedema appointments and get my ass in gear. Literally, like hang that mole excision scar out there and let a professional help me with the healing.  

Indeed as I suspected, I will be learning how to properly care for my limb post-surgery, and that includes a holistic methodology for my head-to-toe mess.  Diet and fluid-intake tracking, walking and post-cancer exercises, massage therapy, manual lymph drainage, stretching/yoga/pilates, oh dear this is as big as I was afraid it would be.  

In my experience, fear and procrastination go hand in hand.  BUT, due to the nagging - Ahem encouragement! - of the Warden, the Curser, the Cheerleader, and my girls, I finally dragged myself to the lady who has studied hard to become qualified enough to deal with me.  

And I am glad I did.  I am ready to give myself the time and energy that I have known all along I need to do.  I will have to work hard; though she was very caring yesterday I detect a hint of Drill Sergeant in her therapy and I will be held accountable for my part in this effort.  We will work together.  

Work me she did too... the lingering headache is actually a side-effect of the detoxification she massaged my remaining lymph nodes into doing.  She explained the basics of the technique and informed me that I will learn how to help with lymph drainage as my homework also.  Eeek... for over a year I have pretty much avoided contact with my right leg as much as possible because it is uncomfortable.  There is a unique combination of heaviness, numbness, and tingling that plagues my every day use of the leg, but it turned out to be okay for her to touch it.  Out of my comfort zone I jumped, and gave it a sincere try. 

Patiently she listened to my story and what my concerns are now with my body, and she gently reminded me that I am not alone in this journey and to just take it step by step.  She said something I identify with: I am "building my team."  She is correct, I have a huge team and I am apparently still building it.  In addition to my loving family(ies) and friends, my medical team is growing in the diverse way I have always wanted it to. 

It did help that we had calming quiet conversation about our commonalities, namely Motherhood, Melanoma, and even Maserati! I like this lady - she was in Europe earlier this year so we talked caprese salad and Italian coffee.  My goals mesh with her experience, and I am grateful to have met her and to be working with her. 

I will be going back weekly for the near future, with my notebook detailing diet and activity and any patterns I may notice in the progress of my lymphedema limb.  I can tell already, I will learn a lot about how my body works with regard to lymph and glandular function.  Stuff I thought I already knew enough about!?  HA. Learn something new every day.  

Couple of neat points I learned yesterday about lymphedema:

• lymph fluid (I know that sounds gross!) is a protein-rich fluid which travels along the lymph nodes throughout the body, helping the body to expel toxins and waste stuff through the pores, perspiration and saliva.  

•  anyone with lymphedema has to watch for infection in that limb - especially cuts or insect bites - as it can become a problem very quickly.  Patients with advanced lymphedema (which mine is NOT) can be so vulnerable even as to have a standing order for antibiotics that can be filled immediately upon a danger sign, that is how quickly infection can become a problem. 

• my affected areas are two-fold: my right leg from the node dissection surgery for metastatic melanoma in May 2014, and my left shoulder and neck area from thyroidectomy and removal of 37 lymph nodes for thyroid cancer in December 2014.  I am permitted to consider getting a new tattoo after my clinical trial is completed, but I am not permitted to get it on my left shoulder as I was thinking I would.  Interesting for sure (and not a devastating piece of information, I just thought it was intriguing)

The "R-Words" in Cancer

Long before I was ever diagnosed with the big C, I rode along the congratulatory wave whenever in the presence of someone declared "In Remission."  

I didn't really know what it meant, except that it was good, and that commonly, after a number of years "In Remission" a cancer patient could call themselves cancer-free.  They could also resume normal living, recover from treatments, and reside in the general hope that they would remain in remission and their cancer battle was one they could proudly refer to as having been in their courageous past.  

I have yet to hear any of my oncological team say that word, in reference to myself or to anyone we have spoken about.  I don't know if it's an 80's term?  Or one for cancers other than melanoma?  Or a fictional definition?  

It can't be fictional or old-fashioned, because I have several cancer friends and family members who have been officially titled In Remission.  For years in fact, and recently!  

My vision-of-beauty breast-cancer Survivor Auntie for example, and my world-traveling Gramma who is surviving not one but two diagnoses! My Uncle too. And my local friend who battled a brutally complicated tumor and has worked incredibly hard to recover and create her new normal.  I even met a friend in a support group in the winter who is battling her FOURTH primary.  That means four different cancers throughout her life, and she is still fighting.

All very inspiring people who have every right to be proud of their accomplishments and bravely continue their fight every day.  I look up to them, and I admire them, as I do all of the cancer friends I have met along this journey, whatever stage or phase they may be at.  

I envy them as well.  I want to be In Remission.

In my experience, I am consistently informed of another R-word in cancer: Recurrence.  I have written this word in passing several times, but until now have not really explained it.  

I remember thinking a few years ago when a friend was explaining details of his wife's cancer that I couldn't possibly ever understand the kind of stuff he was talking about, the words and phrases and percentages and what it all meant!?  But now I throw these words around without taking into consideration that those listening to me may wonder what the heck I'm talking about.  

Dictionary.com gave me these definitions:

 Remission (Medicine/Medical):

• a temporary or permanent decrease or subsidence of manifestations of a disease.
• a period during which such a decrease or subsidence occurs:  The patient's leukemia was in remission.
• A period during which symptoms of disease are reduced (partial remission) or disappear (complete remission). With regard to cancer, remission means there is no sign of it on scans or when the doctor examines you.

Recurrence (Medicine/Medical): 

• A return of symptoms as part of the natural progress of a disease, as in relapsing fever. 
• Cancer recurrence is defined as the return of cancer after treatment and after a period of time during which the cancer cannot be detected. (The length of time is not clearly defined.) The same cancer may come back where it first started or somewhere else in the body. 

My future is based on my likelihood of recurrence.  I have diagrams drawn by my oncologists depicting what the percentages and statistics say about my two primaries (Papillary Thyroid Cancer and Nodular Melanoma), and I struggle every day to overcome the numbers that seem to be very clear to my medical professionals.  

I am at "Intermediate" risk for recurrence of papillary thyroid cancer, based on the results of my post-radioactive iodine treatment full body nuclear medicine scan in March.  Here is a very informative website re-capping much of what I have described or am experiencing: American Thyroid Association

As for the melanoma?  Not so easy to define, and certainly more depressing.  The reason for the 68-week clinical trial was to try to extend the time before inevitable recurrence of melanoma.  Typically someone in my situation after the node dissection surgery I had in May 2014 is given approximately nine months until the melanoma "returns" or is detected elsewhere in the body.  The pacmen are the best defense at the moment to delay that, by another nine months to a year.  

Thankfully I can report some melanoma patients have a much better story to report than that.  Save Your Skin Foundation founder Kathy was first diagnosed with stage IV malignant melanoma in 2003 and she is still here fighting - and very vocally fighting, I might add.  She had four treatments of the same stuff I had eight doses of, so here's hoping I got the same lot as she did!  I have not heard Kathy use the word Remission, but I have heard her use the word Survivor.  And for much longer than nine months.  

Every three months I await my CT scan reports... remission? or recurrence?

My heart goes out to cancer friends who experience recurrence; I have been thinking of two ladies in particular who very recently have been prescribed places back in the hot seats: CT, MRI, bone scan, Chemo, Radiation, all of those words are back in their daily vocabulary.  It is terrible, and catches one by scary surprise.  

It is this ominous mystery in a cancer patients life that gives them equally the right to celebrate survivorship as it evolves, and to dread the possibility of recurrence.  It is that which defines how the cancer journey molds a previously "normal" person into a completely new being.  

 (photo cred: http://r-p-e.blogspot.ca/2014/02/beyond-good-and-evil-chapter-three-and.html)

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What is metastatic melanoma?

Melanoma a type of skin cancer that forms in the pigment-producing cells of skin, mucosa, eye and rarely other sites. Metastatic melanoma is melanoma that has spread to other sites of the body. The spread occurs through the lymphatic system and/or the blood vessels. Melanoma can spread to the subcutaneous tissue which lies underneath the skin, the lymph nodes, and to other organs such as the lungs, liver, to bone or to the brain.

Metastatic melanoma can be classified into local recurrence, in transit metastasis, nodal metastasis and haematogenous spread.   I am at high-risk for the first three.

Local recurrence of melanoma

Local recurrence is defined as a recurrence of melanoma within 2cm of the surgical scar of a primary melanoma. It can result either from extension of the primary melanoma, or from spread via the lymphatic vessels.

In transit melanoma metastases

In transit metastases are melanoma deposits within the lymphatic vessels more than 2cm from the site of the primary melanoma.

Nodal melanoma metastasis

Nodal metastasis is metastatic melanoma involving the lymph nodes. Every site on the body drains initially to one or two nearby lymph node basins. The lymph nodes first involved are the regional lymph nodes. Usually the involved lymph nodes become enlarged and may be able to be felt.

Haematogenous spread of melanoma

Haematogenous spread is spread of melanoma cells in the blood stream, which can happen either by a tumour invading blood vessels or secondary to lymph node involvement. Once in the blood stream, melanoma cells can travel to distant sites in the body and deposit. It can proliferate in any tissue but most often grows in the lungs, in or under the skin, the liver and brain. Many patients also develop metastases in bone, gastrointestinal tract, heart, pancreas, adrenal glands, kidneys, spleen and thyroid.  

Source: http://www.dermnetnz.org/lesions/metastatic-melanoma.html 

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 Article © Natalie Richardson, 2015